Tamoxigang cancer support thread 54: A new thread for a new year!

[WhatWouldLeslieKnopeDo]

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

Morning everyone
Big hug to sleepy, hope your breathing is a bit easier today

Speedy glad work went ok, I still miss having my own class though supply is much less stressful !

Silly dog well done for getting through having your head shaved, it will grow back but it's not an easy thing to go through

Love to all for a relaxing Sunday X

Good morning all.
Mrs: yes although this lapse between the chemo and rads has been the closest thing to 'normal' since my surgery in July,I find I am also somehwat anxious about what is happening inaide of my body and whether those damn cancer cells have made a come back or not been affected by the chemo etc etc...these thoughts lurk in the back of my mind even though I am grateful to be over the chemo.
Amber: wishing you all the best with your surgery. May I ask if you will need any treatment after they operate?
Sleepy: take care. Hope you feel better and your breathing is easier.
Speedy: i miss work so much and hate this idle state i am in. So, you did the right thing going back for sure!
Sillydog: it really did help having my hair verahort before it fell out. I can not imgine how it would have been had i left my hair long! I no longer cover my head now. I have wha my DS call" a boy's head"! Too much white yes but it is soft and growing. Soon yours will all grow back too.
Waving to everybody else.

I meant to ask Marshy about Cuba would you recommend it ? We don't know where to go this summer and that is one of the places we have been looking at- tentatively looking after my mammo was ok

So my rads start tomorrow. I know I have asked before, but any tips or advice are very much appreciated!

Good luck royal. Interested to hear what people say about rads as may have to have once chemo finished. Did you / do you have to get the little tattoo things?
Currently waiting on scan appointment as now half way through the planned chemo sessions.
Agree that it's easier to have hair nice and short once it starts coming out.
Waving to all.

Hi sandwich. Yesi had the tattoes during the ct simulation, abiut 9 days ago. They are so tiny, hardly visible. I am going to have to hold my breath for about 39 seconds a couple of time during the session to this minimizes damage to the heart and lung. I was given a thorough explanation of the whole procedure and the lovely ladies here have recommended Moogoo cream. The nurses at the hospital advised against using deodorant on the affected area , to wear lose fitting and cotton clothing, to keep the area moisturised and avoid rubbing against the skin( try to keep arm away from body and, as my tumour was in the lower area, to avoid bras if possible cause of friction)
What i want to know is real experience of the rads: what does the skin feel like afterwards? Are the skin areas that do get "irritated " painful or is it just annoying? Etc..i get quite sweaty in the area where the tumour used to be and that will probably increase any irritation. I read cornstarch is useful as you should never use talc. I think I am acing ahead as usual!
Sandwich, whatever it is like, everybody tells me it is way easier than the chemo! So something posiitve i guess!

Oops that was 30 seconds:)

Hi Royal, I'm pleased your rads are finally due to start. I didn't get the instructions to hold my breath and it was my left side too. I also didn't have chemo so can't compare it to that.

My experience was generally fine. I had 15 sessions, my skin got pink by the end and I used moogoo which worked well. I did end up with a very painful nipple, it went quite dark and was really very sore. My whole breast was also very painful by the end and I saw a consultant on the last day as the scars had developed lumps either side, all the way along. I was sent off to my own hospital to see my surgeon. On examination he concluded that each hole where a stitch had been had swollen up. It was quite bizarre and obviously not a normal reaction. About 18 months later the fine scars have faded to white but the red bumps that developed over the stitch holes are still pink, but now flat and fading.

So I'm sure it will be easier than chemo but it may get a bit uncomfortable as you're having more sessions than me.

Thanks mrs. Sounds like it was somewhat tough for you. Could the bumps be due to the fact you had rads after surgery?
I am so anxious about the rads although i have already been through chemo ! A very possible skin reaction does worry me because there really is not much to do about it!

Cuba - well we loved it mum2 and have booked to go again next January (ignoring that I'm due my annual.check up the week before) but I don't think it would be for everyone. It's quite a poor country and that's reflected in what they can provide for visitors. Lovely people though, great music and dancing, beautiful countryside and beaches, lots of historic interest, fascinating social/political set up. I'm looking forward to going back.

Apologies for not checking in with everyone.

Hi Royal, yes I think I had rads six weeks after surgery so the scars were quite new. It looked like rows of blisters down either side of each scar ( lump and snb).

Something else I've just remembered. Rads can affect the rib bones and afterwards they can become inflamed. This first happened to me late last year, over 12 months after treatment. I couldn't work out where the pain was coming from for a while and spoke to my nurse. She recommended applying ibuprofen gel for a couple of weeks which reduces the inflammation and pain. I've got it again at the moment so the gel is back out. It's nothing major but just reminds me that rads is actually quite brutal treatment too.

My tattoos are quite noticeable, I had a student doing them and she was quite generous with the ink.

Good luck Royal. Hope it goes smoothly. Am afraid I can't add to the rads discussion as I didn't have it.

One of my scars has got a bit sore and red. I have now managed to remove the stitch that was poking out so hopefully that was what was irritating it. Still have two stitches poking out of another wound but they won't budge.

How are you feeling Sleepy?

Good luck with the rads Royal. I can't offer any advice as mine are still to come after my surgery, but will follow your experience with interest and hope to get some tips from you. I also wanted to sympathize with the feelings of cancer spreading around your body, I haven't had surgery yet, and knowing it is already in my lymph nodes, worries me so much. Secondary cancer is obviously going to be the biggest worry in our lives for the years to come I'm afraid, but I find the best thing for me is just to develop some tunnel vision, get through the treatment and try live life and plan for it as if this thing never happened. I'm trying not to waste too much time worrying about things that might never happen. It's not always easy though, and I think most of us will have days when it's hard not to worry.

I find having a project to focus on has helped me through the treatment so far, first there was Christmas, then I painted a picture, I've read a lot of books I've always wanted to read but never had time for, and at the moment I'm replanning my wardrobe. Having to look good without hair has made me rethink my current style and I think I've realised the colours I wear were based mainly on my lightened blonde hair rather than skin and eye colours and don't actually suit me that much. I'm not planning to lighten my hair as much when it returns (although I suspect I will need something to cover they grey hairs) so have had a big clearout and bought a few new bits in gorgeous colours to wear when my hair starts to grow- can't wait!

I've also done lots of clearing out of cupboards and paperwork. My next project is going to be planning a bedroom redecoration for DD, she goes to seconday school in September and I want to create a space where she can bring her new friends after school. She hasn't had it decorated since she was 3 so it's overdue as it looks too young for an 11 year old now. The fun is in the planning which we can do now, the hard work will have to wait until the summer though when I will hopefully have a bit more energy after my treatments are over.

Waving to everyone else and hope your week is as good as it can be.

Thanks mrs, fresta and speedy.
So my first session went well. It was over in no time at all. Getting me in the right posiiton was the most time consuming as I had already read. The only bother was my affected arm as I ahd to keep it above my head in an angle and this was father uncomfortable and it took a good hour or so for my arm to feel normal again. I will see tomorrow if they can figure out how to make it more comfortable.
Fresta, your strategy for coping is wonderful and pretty useful too ! I wish I had a knack for decorating etc but I am rubbish at anything artistic
Waving to everybody else.

Royal, I'm glad your first session went well. They seem to be pretty good at checking how you are each day so do shout if you have any issues. Keep slapping on the moisturiser afterwards. I was also given a tube of aqueous cream to wash with as they don't recommend soap. It was pretty gunky and I just used it on that area and normal stuff elsewhere. I don't think I wore antiperspirant throughout, it was July but I had no complaints about smelling bad!! You should be fine with this freezing weather.

Marshy, nice to see you again.

Sleepy, hope you're feeling a bit more comfortable.

Fresta, great advice and way of thinking. I do usually get on with life as normal despite the bad thoughts but it's check up week so I'm a bit obsessed.

Speedy, ugh, pesky stitches I remember those. Hope they disappear soon.

Hi to everyone else.

Glad your first session was Ok Royal and hope they can sort the arm problems for you.

Has anyone had a collapsed vein in their arm and did it recover? It's the one in the crook of the elbow from where they always take blood for tests and put cannulas in for the scans, its very stiff, sore and sunken and dark.

Royal, I'm glad the radio therapy is underway. I hope it goes smoothly for you.

Fresta - have you had any treatment with epirubicin? That stuff burned my veins so they are still scarred and tight seven years later.

I have finished my first four days of my trial treatment (four days on three days off) it has been really unpleasant for nausea and stomach cramps. I'm not sure I could do a year of this! Unless it works in which case I shall suck it up. It is quite a different experience doing chemo to try and prolong my life to when I thought it could save me. It is a lot to get my head around.

I have another session with the Macmillan reflexologist tomorrow. I hope it is as nice as last time.

I have had epirubicin but it's not that vein that's sore really, it's the blood test vein that's giving me the most trouble.

That sounds tough sleepy, although maybe the symptoms will become easier as you get used to the medication, I have found that with the chemo, you seem to get used to it, or at least you know what to expect each time and deal with it a little easier maybe. I can only imagine what you must be going through and really hope it works

Sleepy they should be able to give you something for the nausea, and if it isn't working then something stronger. You can't go for a year feeling like rubbish. It isn't fair that you need such an unpleasant treatment, but I really hope that it works for you.

Yesterday I had to stay home because my warfarin INR went quite high. Going out would have risked me bumping my head or falling. Mind the only thing I had planned was a hospital trip, but I had the appointment by phone instead. Today my blood is almost within range so I can enjoy my week 3. Does anyone else find that chocolate tastes of almost nothing on chemo? I miss my chocolate hit, but every time I try it I'm disappointed.

My veins have held up so far, but I am concerned this won't last. I was having daily blood tests during my hospital stay, and they were finding it hard to find a vein by the end of it.

Thanks ladies. Today's s ession was better for my arm as theya djusted the cups where I place my wrists, but I have some pain on the affected aide now! It is not sharp but enough to be uncomfortable especially when leaning or getting up. I will mention it tomorrow.
Mysillydog, What a the mixed bag of a day you have had. About the veins and blood tets, didn't they offer a port a cath?

Hope everybody else is doing ok. Am quite tired and need to lie myself down a bit.
Take care all.

Royal , you are just starting a bit of a marathon so you definitely need to rest and look after yourself.

I am going to back off the thread for a bit because I don't want to bring everyone down. I will be back when my anti depressants have kicked in and I have recovered a sense of perspective.

Reflexology was lovely again, although I cried steadily throughout, I thoroughly recommend it.

Sleepy I'm sorry about the side effects, no need to back off ( unless you really want to ) this thread should be here for the good times and the bad, you're not bringing anyone down for you x

Oh Sleepy, don't feel you need to back off, we're here for the good and bad times too.

It was secondary school allocation day today, dd didn't get her school of choice, she missed out a grammar school place by 6 ranks! We will be appealing but could do without the anxiety on top of chemo this week.

Sleepy, please do not back off if it is for our sake! We are here to support one another and nothing you say will make us feel bad. Whatever you feel like, we are here for you.if we can not make you feel any better, at least you can offload here!
Fresta, by all means do appeal! Hopefully you will manage to get your DD into the school of her choice.